key: cord-349256-ky3h37o6
authors: Abrams, Elissa M.; Greenhawt, Matthew
title: Special Article: Mitigating Misinformation and Changing the Social Narrative
date: 2020-08-18
journal: J Allergy Clin Immunol Pract
DOI: 10.1016/j.jaip.2020.08.007
sha: 
doc_id: 349256
cord_uid: ky3h37o6

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Conflicts of interest: Elissa Abrams is a collaborator with the Institute for Health Metrics and 23

Evaluation, is on the National Advisory Board for Food Allergy Canada, and is on the National 24

Food Allergy Action Plan Action Steering Team for Food Allergy Canada. Matthew Greenhawt is 25 supported by grant #5K08HS024599-02 from the Agency for Healthcare Research and Quality; is 26 an expert panel and coordinating committee member of the NIAID-sponsored Guidelines for 27

Peanut Allergy Prevention; has served as a consultant for the Canadian Transportation Agency, 28

Thermo Fisher, Intrommune, and Aimmune Therapeutics; is a member of physician/medical 29 advisory boards for Aimmune Therapeutics, DBV Technologies, Sanofi/Genzyme, Genentech, 30

Nutricia, Kaleo Pharmaceutical, Nestle, Acquestive, Allergy Therapeutics, Allergenis, Aravax, and 31

Monsanto; is a member of the scientific advisory council for the National Peanut Board; has 32 received honorarium for lectures from Thermo Fisher, Aimmune Therapeutics, DBV 33

Technologies, Before Brands, multiple state allergy societies, the American College of Allergy 34

Asthma and Immunology, the European Academy of Allergy and Clinical Immunology; is an 35 associate editor for the Annals of Allergy, Asthma, and Immunology; and is a member of the 36 Joint Taskforce on Allergy Practice Parameters  37  38  39  Mitigating Misinformation and Changing the Social Narrative  40  41 The SARS-COV-2 COVID19 pandemic has exposed a defining issue of our In recent years, there has been increasing reliance upon cable news cycles and news 57

reporting from social media, often occurring in real time. During public health crises, such as 58 the recent H1N1 epidemic, with heightened risk perception, the public has become more 59 heavily reliant upon social media to inform their understanding of health information. This has 60 become particularly evident during COVID-19. This information is available for public 61 consumption, often unvetted for accuracy, and at times politicized. However, even prior to the 62 pandemic, there was a shifting to the internet and forms of social media (such as Facebook and 63

Twitter) for basic medical information, easily accessible by patients for consumption and 64 professionals for dissemination. With this has come the tendency for misinformation to be 65 disseminated within many aspects of medicine. Allergy as a specialty has not been immune to 66

this. Over 50% of all patients may search online information sources before allergy 67

appointments. If online information is incorrect, as noted in an article about "Dr Google", 'this 68

can not only damage the patient-provider relationship, risk polarizing health beliefs and set up 69 discourse between clinician and patient, but also lead patients to seek non-evidence-based 70 promises of miracle cures, costly treatments, or unnecessary testing.' 4 Worse, it may deter 71 actual medical progress being made to address treatment of their allergic disease. 72

Take as one example IgG4 testing as a marker of food allergy or sensitization, a test that 73 has been uniformly denounced by multiple allergy organizations including the Canadian Society 74

of Allergy and Clinical Immunology. However, this is heavily marketed, often directly to 75 consumers or by non-allergists, as a valid and reliable test. IgG4 testing has potential harms 76 including leading to unnecessary elimination diets (impacting growth/nutrition) ,heightened 77 anxiety about food choices, increased healthcare costs/service utilization, and the potential to 78

increase the risk of IgE-mediated food allergy in young children due to misguided advice for 79 specific food avoidances. 5 However, despite the consistent disapproval of using these tests by 80 the medical community, IgG4 testing is increasing in popularity among certain segments of the 81 population, is helping to foster labels such as 'non-celiac gluten allergic' within popular culture, 82

and may be driving consumer demand for such tests (some of which can be obtained without 83 J o u r n a l P r e -p r o o f clinician involvement). In fact, in Canada, allergy testing was the most common test advertised 84 by naturopathic clinic's websites, and 'allergies' was the most common treatment ailment 85 advertised. 6 The Centers for Disease Control found that in 2016 Americans spent $30.2 billion 86 out-of-pocket on complementary health approaches. 7 87

Another example, consider influenza vaccination in children with asthma. While the 88 influenza vaccine is broadly and universally recommended in the United States population, 89 children with asthma are noted to be higher risk for influenza-related respiratory complications, 90

and influenza vaccination is uniformly recommended among children 6 months and older. 91

Asthma is the most common co-morbid medical condition among children who require 92 hospitalization due to influenza infection. 8 However, influenza vaccine uptake among children 93

with asthma in the United States can be as low as 48%. 9 For years, there was question of the 94 safety of this vaccine in asthmatics, build largely on expert theory and thin on evidence. 95

Ultimately, after years of equivocation, this myth has been debunked, but doubt still lingers, 96 years later. Studies have noted significant misinformation contributing to vaccine hesitancy 97

including concern that the vaccine might cause significant harm, low perceived safety and 98 efficacy of vaccines, low perceived susceptibility to complications from influenza, and 99 significant misconceptions about the influenza vaccine (such as that influenza vaccination can 100 cause symptomatic flu). 10 101

So why is such misinformation so pervasive? Misinformation dominates our social culture, 102

and yet, 'advocates and affected individuals dominate discussions' while researchers and health 103 professionals are busy diagnosing/researching. 11 While medical policy and research is 104 important, it may not be reaching our patients, as the public becomes more reliant on the 105 media and social relationships to inform their level of risk perception, and to become their 106 more trusted source of healthcare information. Who society views as a trusted healthcare 107 expert has shifted, in particular when there is ample access to a litany of information for 108 patients to research and influence their health beliefs. 109

With increasing health social movements, there is now extended overlap between scientific 110 knowledge, popular culture and a more complex 'public shaping of science' which physicians 111 have to engage, and not dismiss. 12 The media has significant leverage on the framing of public 112 health perception, and is instrumental in changing this narrative. 11 Engagement of the media 113 through interviews, blogs, and press releases, and distilling of this message through social 114 media sources, would be impactful and is required to reach our patients. As noted in a recent 115

infoveillance study of tweets during the COVID19 pandemic, 'there is…a need for a more 116 proactive and agile…health presence on social media to combat the spread of fake news.' 13 117

Social media could also be used to monitor and track misinformation, and therefore be an 118 instrument to help respond to it. One such avenues is a public twitter dataset, as was recently 119 established for COVID19. 14 This dataset is available to the research community and has 120

republished over 123 million tweets as well as statistics related to those tweets such as 121 reactions to COVID-19 related events. The interesting aspect of this data set is that it 122 aggregates in real time, and can capture trends in how misinformation may segment among 123

viewers. This type of social media dataset is anticipated to have a role moving forward in 124 tracking misinformation as well as contextualizing the COVID19 on-the-ground response. 125

Physicians can sign up for alerts on major search engines, join listserves to receive updates, and 126 use the available information to better arm ourselves to counter misinformation. 127 J o u r n a l P r e -p r o o f However, in shifting the narrative to target misinformation we need to recognize that social 128 media is only one part of the larger problem. The ecological model, often used in health 129

promotion, provides a broader way of contextualizing misinformation in terms of individual 130 influences, relationships, community and society. 15 As noted in a recent book, 'Ecological 131 models of health behavior emphasize the environmental and policy contexts of behavior, while 132

incorporating social and psychological influences. Ecological models lead to the explicit 133 consideration of multiple levels of influence, thereby guiding the development of more 134 comprehensive interventions.' 15 135

As one example, consider influenza vaccine hesitancy. While social media may influence an 136

individual's health behavior, there is also a distinct role for interpersonal influences such as 137

interest among social circles in alternatives to traditional medications, and both familial and 138

peer group vaccine hesitancy. There are also broader community and societal factors 139 contributing to vaccination rates and attitudes including access to primary care, cost, and lack 140 of compulsory vaccination policies in the United States. To truly change the social narrative, 141

whether it be COVID19 response, alternative health beliefs, or vaccination, we need to view an 142

individuals' opinions, even if largely shaped by social media, within their broader social and 143 societal context. 144

The COVID-19 pandemic is shifting our world in ways beyond our imagination but has also 145 uncovered ways in which our system has to change. One of those ways is an increasing 146 recognition and response by physicians to the pervasive and dangerous misinformation that 147 abounds, in all areas of medicine. As physicians, we need to learn how to contribute to the 148 discussion and better inform our patients and change our mindset to engage in less traditional 149 avenues of knowledge dissemination. 150

United Nations COVID19 Response

Health Utility, and Health Beliefs Among the US Population During the Shelter-in 161

Place Phase of the Response to the SARS-CoV-2 Pandemic

How Dr Google Is Impacting Parental Medical Decision Making

CSACI Position statement on the testing of food-165 specific IgG

Supported by science?: what canadian naturopaths advertise to the 167 public

Factors associated 177 with refusal of childhood vaccines among parents of school-aged children: a case-control 178 study

Frames, claims and audiences: Construction of food 180 allergies in the Canadian media

Medical modernization, scientific research fields and the epistemic politics of 182 health social movements

Top Concerns of Tweeters 184 During the COVID-19 Pandemic: Infoveillance Study

Tracking Social Media Discourse About the COVID-19 186 Pandemic: Development of a Public Coronavirus Twitter Data Set

Health Behavior and Health Education Theory, Research, and Practice 189 Chapter 20 -Ecological Models of Health Behavior